dusting off the cobwebs

Its been a while. Quite a while. Since I last posted, we passed a lot of significant milestones. All of these milestones were pretty hard, and they actually made me feel less like writing. Instead, they made me want to crawl into my own little cocoon and burrow there for a while.

The Big Dates

The first big date was 19w2d, which was my PPROM milestone with the twins. It happened to coincide with the weekend before my SIL's wedding, so it was also a hectic family time. I spent a lot of time crying in the shower and crying in bed that weekend. Hitting my PPROM milestone was harder than I anticipated and made me sadder than I thought it would.

I was also incredibly fearful. I knew there were no ominous warning signs that my water was about to break, but it still felt like maybe there was something karmic or evil about that particular gestational age that would rob me of this little one, too.

My FIL made a toast at dinner in which he listed month by month all of the babies born in our extended family over the past year and he omitted Aminadav and Naava. Given my already fragile emotional state, this really made me feel like crap even though I know he meant no harm by it. I didn't think it was worth it to call him out on it, especially not on my SIL's wedding weekend when the attention should deservedly be focused on her, but it did really upset me and the timing was just very poor.

Y's grandmother noticed the omission and also commented that she always remembers them. We shared a little cry and that made me feel much better.

Later in the week, I reached the gestational age where I lost Aminadav and Naava. Getting to that point was surprisingly less emotionally charged and sad for me than my PPROM milestone. I felt a small weight lift from my shoulders as the day ended.

And just a few days after that was the Hebrew anniversary (yahrzeit) of Aminadav and Naava's death. I knew that being essentially on the same calendar with this pregnancy as I was with their pregnancy, all of these significant dates would come one after the other.

Their yahrzeit falls on the Jewish holiday of Purim, a particularly joyous holiday, ironically. Y and I decided not to celebrate. Instead, I lit their yahrzeit (memorial) candle and we went out snowshoeing in a nature reserve.  I wanted to do something solitary in nature, so this felt right to me. In the evening, we went out to dinner. I spent a lot of time crying on their yahrzeit and the crying was very therapeutic for me and actually made me feel better, as I find sitting in the depth of my pain on occasion often does.

Then about 10 days after that was the one year anniversary of their birth/death on the English calendar. That date was actually much easier and lighter for me than their yahrzeit. I focused on my appreciation for the blessing of their brief existence instead of on all of the hurt, pain, and what-ifs and should-haves.

The Babe and Me

Thank goodness this pregnancy continues relatively uneventfully. My only major complaint is that I have frequent contractions and cramping/pressure, which coupled with my anxiety makes me really nutty. I go in weekly for a tv u/s to measure cervical length and take a quick look at the babe. My cervix continues to hold stable, usually measuring between 3-3.7cm. This is obviously a big relief.

At 21 weeks, I had my anatomy scan. Everything looked good and we were told for the 4th time that baby is a girl :) The only notable finding was an echogenic focus on the heart, but we are told that with improving ultrasound technology, this finding is becoming increasingly common and is very unlikely to have any significance in light of our first trimester screening and quad screen results.

Baby girl was super active during the anatomy scan, which was pretty cool to see. I have an anterior placenta again this time around, so movement was a little muted at first, but during the past few weeks I have been feeling consistent movement including some really good jabs and kicks that are visible from the outside, which is pretty cool. I started progesterone on the same day as the anatomy scan.

I had a detailed placenta scan at 22 weeks, which showed my placenta looks great. This is also a big relief since it seems placental issues are what began the series of disasters that ultimately resulted in the loss of the twins.

I've made one trip to L&D, which was actually a positive experience, but hopefully we won't have reason to repeat it for many more weeks. I was having menstrual-like cramping and lower back pain for a few days that wasn't going away and I was scared of PTL. My MFM happened to be on call that night and she was very reassuring. We were in and out within an hour with the knowledge that even if I was contracting, my cervix was stable.

I met with the hematologist again a couple of weeks ago. The current plan is that I can get an epidural as long as I take clotting drugs prophylactically beforehand (the concern with an epidural with a bleeding disorder is a subdural hematoma). I will see her again in May.

I am really fearful and anxious these days. I am so scared my body will screw up. I know these next few weeks until 28 weeks are really critical. I relive my water breaking all of the time - it was such a strong sensory experience. 

I know that right now I am very "lucky." Lucky in that I had a relatively easy journey (relative to my previous history, anyway) conceiving this pregnancy after losing the twins and lucky in that so far, I have had a pretty good go of it this time around. (It feels a little ominous and foreboding to write that.) I have experienced enough to realize that this journey has everything to do with dumb luck and little to do with deserving.

I exist in this really weird place where I am constantly trying to mentally prepare myself for losing this dream little girl while in the same moment I can look at cute baby clothes and read carseat safety reviews. Stuck between preparing for the future I have dreamed about for so long and preparing for the death that I pray won't happen. 

                                                   23 weeks

grief comes in zig-zags

1. Denial
2. Anger
3. Bargaining
4. Depression
5. Acceptance

They say this is the order of the 5 stages of grief. My grief is non-linear. There is not really chronology or order to it. I skate around in my grief in crazy zig-zags and dizzying loops. Mostly, I have done a lot of denying. More hours than not my pregnancy with Aminadav and Naava and everything that immediately followed it feels like a strange dream. In fact, most of the time they feel like a strange dream; maybe some souls I knew in a past life. So familiar but so ephemeral. Most of the time on some deeper fundamental level I do not believe that any of it really happened; it feels like a very sad story someone else told me about myself.

These hours are inevitably followed by the harder moments when I cannot fathom how they are not still here with me, either inside of me or inside an incubator that is much safer than inside of me. But mostly, I have done a lot of denying, and then I can manage with reality in little bits and in a measured dose.

They say bargaining is Stage 3, but I did a lot of bargaining very early on. I am an expert bargainer. I bargained all throughout my fertility treatments and through my first and second pregnancies. Sometimes I bargained with G-d, sometimes with myself, and even more often, with no one or nothing in particular. When Aminadav and Naava died, I was already a pro. The bargaining came immediately and naturally.

I have done a lot of what Joan Didion would refer to as magical thinking in her The Year of Magical Thinking. The magical thinking has all been part of my bargaining hobby and oftentimes has been quite elaborate to the point that one might think it takes a great deal of imagination. I find the magical thinking exhausting but not so much a creative pursuit. As I said, I am very good at it. I am trying to cut myself off from it.

My first few weeks back at work, I spent more of my day surreptitiously conducting PubMed searches on every possible word and phrase variation of "pPROM" "placental abruption" "twins" and "subchorionic hemorrhage" than I actually spent performing lab work. I remained steadfastly convinced (and honestly, still often do) that if I could find some way to retrospectively fix or solve what happened, especially to Naava, whose amniotic sac was still intact and who was born alive, that I could actually change the outcome.

Oftentimes, I have even been convinced that just finding clinical studies with better overall outcomes than the gloomy statistics reported by my doctors would change the outcome. "See! But they live!" I would exclaim triumphantly, well after the fact of their deaths. I recognize that this is spectacularly delusional, but I still can't help it.

Stage 2, anger, reared her head later on than denial, bargaining, or depression. I was really angry with myself and I still am. It is easy for other people to tell me to be gentle with myself, to be kind, but much more difficult to internalize it in a way that is genuine, because I really do honestly hate myself for what happened. The self-loathing is a narcissistic pursuit; I was unable to indulge in it until I could go longer than a minute without thinking of my poor babies and their horrible fate & bring the focus back to myself.

Even more recently, my anger has developed a new prong, and it is a sharp one. Now I am angry at other people. At the beginning of the week, we saw a doctor who specializes in miscarriage and pregnancy loss. I still haven't done any loss-related tests; specifically, I was hoping to do some sort of clotting and autoimmune panel, especially to rule out thrombophilias since they are often associated with placental issues. This doctor became the new subject of my wrath when he sent me on my way with no new ideas or additional information beyond a lab slip to test for various infections. I will never get back the 120 seconds of my life I spent peeing in a cup for chlamydia and I am very angry.

I guess the only flavor of the 5 stages I have yet to experience is acceptance. Maybe I have even experienced a little of that too, in small doses during those rare moments when I can imagine my life having a happier focus one day. Not that there won't always be an empty space where Aminadav and Naava were but that I will learn how to be happy and appreciative without ever being whole; that I will learn how to live with this empty space, not in spite of it or around it but simply with it. For now that seems like a pretty tall order. One day.

My Uterus - an artist's rendition

Apropos to my last post-

As we've consulted with others for a second opinion* re: the retained placenta and issues pertaining to when to operate and whether it's ok to travel, they've seemed a bit befuddled by the lack of images from the hysteroscopy to depict exactly how much placenta is still in my uterus (like are we talking about a small fragment or a full placenta, for example). Naturally the gynecologists are wary of a second-hand description coming from an eye surgeon and his "scientist"** wife . I respect that. Anyhow, thank goodness on the official form for my hospital re-re-admission (aka return to The Slammer), Prof. S. drew this awesome picture of my uterus with his official stamp and John Hancock on it, lest any colleague require a visual depicting exactly what is going on (notice the accuracy of the three fibroids including the third one which is larger, more misshapen, and very accurately obliterated by angry scribbles of retained placental tissue).



* We have nothing against Prof. S, but the situation is not so clear-cut given our grandiose travel plans... "between a rock and a hard place" he said, except he didn't really say exactly that, he used some Hebrew expression which I now forget which means the same thing.

** During the three weeks of the year when she is not having a gynecological or obstetrical emergency.

***

In really sad news, a member of our community is being induced today during her 22nd week, after a recent ultrasound showed the baby had no heartbeat. Today I visited her in the same ward, in the same room, where I gave birth to Aminadav and Naava. I feel so sad for her. I still don't know why such terrible things happen to good people.

It's one month today since I pPROMed and my body abandoned my babies (or at least abandoned Aminadav; oftentimes I believe I was the one to abandon Naava, though logically I know there was no way in hell my doctors were about to agree to attempt to perform a delayed interval delivery). Not one month since I gave birth and death to my two little ones, but one month since that awful ambulance ride in my bedroom slippers through a hazy, gray, cold Jerusalem morning when my world as I knew it came crashing down.

Aminadav and Naava

Aminadav and Naava were born on March 7 at 10:30 pm. They were perfect and beautiful in every way but born too soon and too small to survive. Aminadav's water broke on the morning of March 4, believed to be the result of the partial abruption of his placenta, which occurred three weeks earlier. Both of my sweet babies were alive until the end, even my poor Aminadav who was lying across the top of my cervix unable to move with no amniotic fluid at all. Aminadav came out blue - clearly he was suffering those last few days - but my beautiful Naava was healthy and pink.

There is a Midrash in the rabbinic retelling of the Exodus from Egypt where Nachson ben Aminadav jumps into the water of the Red Sea first before the instruction is given, showing his courage and bravery and prompting G-d to split the Red Sea so the rest of the Jews could pass safely across the water to freedom from slavery. Naava means beautiful. Aminadav and Naava - our son and daughter. I wish we got to spend the rest of our lives getting to know our first- and second-born and letting them know how much we love them.